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Hi Henry. I want to let you know that I also had Large B-Cell Non-Hodgkin's Lymphoma, stage-4. It was in my liver, kidneys, spleen, stomach, and bone marrow. It was no picnic getting chemo for five months and all the things that go along with it. Most importantly I want you to know I am now cancer free. I had my last chemo July 2013 and my last CAT scan on Dec 12, 2013. It showed no evidence of disease! I know you can do this. I found being positive in thought helped immensely. I really do not know what else to say Henry. I just want you to realize this can be beat, even when you feel your lowest. I am usually a person who can talk circles around everyone else, I work as a mental health and addiction counselor, but here I cannot find the words. Good luck and know I am thinking the best thoughts for you.

I'm so sorry to hear that you have had lymphoma, but so glad that you have beat it. That's what I continue to hear from multiple sources: this can be beat. So I choose to believe it. Some days it is more difficult than others, but then that is the nature of battling any disease.

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

I'm way overdue to provide an update on my lymphoma treatment. About a week ago I finished my 6th week of chemotherapy. That is the 6th and final treatment in this round. My, how time flies. In addition to IV infusion of chemo over the week, it also concludes with a lumbar puncture and "intrathecal" delivery of prophylactic chemo to my spine / brain. I am so tired of lumbar punctures, but at this point I know almost all of the hospital staff in the "short stay unit", not to mention my oncologist's staff. Overwhelmingly, they are gems.

Along the way, I came down with blood clots in my left arm 2 weeks ago, requiring a trip to the ER and having to give myself injections of blood thinners until my oral warfarin kicked in. Back in February I had a brush with PCP that required a bronchoscopy because it was difficult to confirm. That's when we found out my CD4 count was just 104 (likely due to one of my chemo meds called "Rituxan"), and now I'm taking dapsone as a prophylactic for PCP. Le sigh.

Now I get about 4 weeks of rest, followed by new CT and PET scans in early April. Either I'll be clear of cancer, or I'll need more treatment. Obviously I'm hoping for the former, and it is certainly possible given my super-aggressive "R-EPOCH" treatment plan. But it is not a given, and only time will tell. In the meantime, I'm going to focus on getting some of my strength back, and also getting my appetite back. While I'm not having nausea problems, there is little in the way of food that seems appetizing to me. Any food that is heavy or fried seems particularly unappealing, so I won't be visiting Wumpy's nutrition thread. Ditto for alcohol.

I want to thank everyone for their thoughts and prayers of support. Whether we have been in communication, or you've just been thinking about me, it really helps to know that everyone is here.

Hugs,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Now I get about 4 weeks of rest, followed by new CT and PET scans in early April. Either I'll be clear of cancer, or I'll need more treatment. Obviously I'm hoping for the former, and it is certainly possible given my super-aggressive "R-EPOCH" treatment plan.

I want to thank everyone for their thoughts and prayers of support. Whether we have been in communication, or you've just been thinking about me, it really helps to know that everyone is here.

Hugs,

Henry

Henry, The downtime from chemo is going to feel great. I too am hoping your scan results in April show huge improvement. Keeping you in my thoughts and sending you my best!

Edited to add: I would submit that its probable your scan will come back NED.

Henry I am sorry you are still on the treatment treadmill, though there is nothing quite like the last one in a series . Sounds like the rest period has been well worked for and how typical off sneaky PCP to drop by. You are often in my thoughts and I send as much comfort vibes as I can muster to you , so thanks for giving us this update.All the Bestm

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Add me to this list of voices who are happy to hear from you again. I have made it my personal project since last fall to pray for you daily and I have no intention of stopping! I have always been convinced of the power of prayer (it's that "network of souls" I love to quote every year in the Memorial service!)

Grateful that you have updated us on your progress and grateful that you get a much needed "treatment break." Prayers for the best news possible in April.

Great news Henry...glad the treatment break is starting now....spring has sprung just for you....enjoy the break...all the positive thoughts and love will be flooding in .... look forward to full recovery....

I got the results of my most recent PET scan today: negative. No signs of cancer anywhere. I'm officially in remission. I'm overwhelmed, and I'm still absorbing the good news. Thankfully my 2 sisters and brother-in-law are here to celebrate with me. One sister has been here since last week. My other sister and brother-in-law arrived today at 1PM -- I was able to give them the good news when I picked them up at the airport. Now we can really celebrate the news few days.

No more chemo! I will have follow-ups with the doc every 3 months. And my doc wants me to consult with a radiation oncologist to see if I may need prophylactic radiation. Given that my tumor initially appeared on my chin, it may be more likely that Birkett's lymphoma could recur in my brain or spine, so zapping it with radiation may be called for. Radiation wouldn't exactly be a picnic, but simpler and shorter than my chemo regimen. I also need a CT scan to find out why my lower left abdomen is still somewhat painful -- but we know it isn't cancer. I would have had that CT scan already if my insurance company hadn't balked at having both PET and CT scans at the conclusion of chemo (cheap bastards).

Things are looking up today. I feel like I've had a huge weight lifted off my shoulder, even if I do have a little more treatment ahead of me.

My thanks to everyone who has supported me and prayed for me. I'll provide another update in a few weeks as I learn more.

Cheers,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Thanks for sharing the great news Henry, you deserve the very best. I was just thinking about you this weekend as it had been over a month since you last posted I believe. Enjoy your celebration and we will all cheer you from the four corners of the globe good man!

Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

I am ELATED to see this news. I have prayed for your recovery and your strength daily since this whole odyssey began... Some of that connection happened when I had that powerful moment at the Western Wall in Jerusalem last November. I check daily to see if there are updates in this thread.

You have shown great character and courage in sharing this story with us...it is incredibly inspiring. And this good fortune could not possibly happen to a better guy!

I leave for a two week cruise up and down the Alaskan coast on Friday. I will be sure to toast your good health and your great news when we sail from Vancouver on Sunday.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I am so glad you got this news. As I said before, we may not all have met, talked on the phone, etc, but we worry and pull for each other as if we have known each other closely. I am so happy you got this great news. Continuing to send positive energy that this will be completely in the rear-view mirror.

This is the best news I have heard in a LONG time! Isn't it a great feeling to get good results from a scan? Hard to put into words but I know exactly how you feel. One more treatment left for me and I will burn my chemo shirt!

Great idea! I need to get rid of the button-down shirts I typically wore on chemo weeks. Too many bad memories. The surgeon who implanted my port said she would give it back to me after I get it removed, as many of her patients have "port smashing" parties.

Quote

Edited to add: Keep those chakras clear! lol

Meditation and visualization has definitely helped me through all this, and will continue to do so. That, and the support of all my friends and family.

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

That about sums up how I feel right now. I know I still have follow-up work to do, and will need to be vigilant. But, as this has taught me, one day at a time…

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

I met with the radiation oncologist today. The bottom line is that she believes I should go through a course of "preventive" radiation to zap the lymph nodes that were involved in my lymphoma. When I asked why, she said is was pretty much standard practice for HIV-related lymphomas. She couldn't immediately point me to any studies which indicated this. I could only find some anecdotal evidence when I did a google search.

Phooey. I don't really want to go through radiation treatments. On the other hand, I really don't want a recurrence of lymphoma. The radiation regimen is a relatively short duration: 17 treatments, or just over 3 weeks. And, according to the doctor, it's a relatively low dose of radiation. I'll probably get a sore throat and dry mouth from radiation to the lymph node under my chin, and some nausea / diarrhea from radiation to the lymph node in my abdomen. The doc thinks I'll get through it just fine, but she probably says that to everyone. Though from what I read, the side-effects will likely show up when I'm getting closer to finishing up my treatments.

I need to call back the doc tomorrow, and ask for some reference / study information on radiation for HIV-related lymphomas. I want to be sure this is really necessary.

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

I met with the radiation oncologist today. The bottom line is that she believes I should go through a course of "preventive" radiation to zap the lymph nodes that were involved in my lymphoma. When I asked why, she said is was pretty much standard practice for HIV-related lymphomas. She couldn't immediately point me to any studies which indicated this. I could only find some anecdotal evidence when I did a google search.

Phooey. I don't really want to go through radiation treatments. On the other hand, I really don't want a recurrence of lymphoma. The radiation regimen is a relatively short duration: 17 treatments, or just over 3 weeks. And, according to the doctor, it's a relatively low dose of radiation. I'll probably get a sore throat and dry mouth from radiation to the lymph node under my chin, and some nausea / diarrhea from radiation to the lymph node in my abdomen. The doc thinks I'll get through it just fine, but she probably says that to everyone. Though from what I read, the side-effects will likely show up when I'm getting closer to finishing up my treatments.

I need to call back the doc tomorrow, and ask for some reference / study information on radiation for HIV-related lymphomas. I want to be sure this is really necessary.

We are always told to get a second opinion. She may be right, but I would want more info, too. I suppose oncologists in cities like San Fran, L.A., and NYC would have more experience with poz patients and lymphoma. I would think another reputable doc in this area could be contacted for consult, without having to actually fly and see them.

Whatever happens, I wish you continued success. If you have to do the radiation, I hope you have very minimal side-effects.

Radiation. This past week or two I've done a lot of investigation into radiation treatments for my type of lymphoma, and it is really a mixed bag. Doctors seems very split on on its use to prevent recurrence. I called my doctor and asked why she thought radiation would be beneficial in my case, as opposed to cases where radiation is not indicated. Her response was that since I had "bulky nodal" non-Hodgkins disease (i.e. rather enlarged tumors in my lymph nodes), radiation would be beneficial to "mop up" any remaining isolated cancer cells. I have found references to studies which support that, and others that don't. Secondarily, my doc believes HIV puts me in a high risk category for recurrence, also adding to her radiation recommendation.

I've been perusing several discussion forums for people with lymphoma, and their experiences are just as mixed. There are those for whom chemo alone works and prevents recurrence, those who are successful with chemo and radiation, and those who have recurrence despite both treatments. There's really no way to predict who falls in which category, and of course no guarantee of preventing recurrence.

I do have an appointment later this week with another oncologist to get a second opinion (what an ordeal). In the meantime, I've gone ahead with the CT "simulation" scans needed to prepare my course of radiation. I don't have to go through with it, yet somehow I think I'll be kicking myself if I don't.

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders